Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.

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Sunday, March 4, 2012

Epilepsy: Your Questions Answered

When I asked Robert if he would like to answer questions about epilepsy for people who “read stories about him on the computer,” he got a huge grin on his face.

“I’d like that,” he said simply but the grin tells me he’s quite bemused with the idea of people reading about him. (I’ll now have to watch out for any signs of “diva” behavior).

Let’s get to the questions before I have to sort M&Ms by color or fluff up his pillows. J

(There were so many great questions which came to me through email, caregiving.com and through the blog that I will break up the questions into two posts.This first post will talk mainly about Robert’s seizures).

Q:Does Robert like coming over to our house for the Rocky Road Ice Cream or to visit the animals and us?(Thanks for the question, Hubby).

Robert:“I like seeing the animals a lot and I like Rocky Road Ice Cream also so I like both.And I love both of you.”(Aw, shucks).

Q:What does it feel like when you have a seizure?

Robert:“I’m just out.Completely.”

Trish:Robert’s seizures are called “Complex Partial Seizures” in which he loses consciousness (and will fall if he’s standing).He does not convulse but does twitch his hands or tug at his clothes.His seizures have changed through the years (for instance, before his brain surgeries, his seizures were the Tonic Clonic type – formerly known as Grand Mal).

Q:Can you see or hear anything around you during the seizure?

Robert:“I don’t think so.”

Q:Are Robert’s eyes open during a seizure?

Trish:The first time I was asked this question, I actually didn’t know.I am so busy timing the seizure, saving dinner plates from falling on the floor or catching him for a soft(er) landing, that I hadn’t noticed.Now I know:Robert’s eyes stay open during a seizure.

Q:Does it hurt when you have a seizure?

Robert:“No, it does not hurt.”

Trish: I have to jump in to say that although the seizure itself does not hurt, he has had plenty of injuries during a seizure that have caused him pain afterward.He has a very high tolerance for pain which is sometimes problematic in determining whether or not he’s hurt.When Robert lived independently, he was hurt much more frequently when having a seizure (one reason he no longer lives independently).During seizures, he has hit his head (several times requiring stitches), fallen on a lamp (severely burning his arm because no one was around), drowned resulting in a three-day coma and has broken his jaw – just to name a few.So, although the seizure itself doesn’t hurt, the after effects sure can!

Trish:When we were talking more about this question, he explained that he isn’t more tired after a seizure.Then he proceeded to fake a snore (always with the jokes!).I have noticed, though, that he can be quite tired after a particularly long seizure (or cluster of seizures). Each person with epilepsy is different but many are pretty tired after a seizure.

Q:Robert, do you ever know when you’re going to have a seizure and if you do, can you prepare for it by sitting down in a safe place?

Robert:“Sometimes I can feel it come on and sometimes I can fight it off.”

Trish:Robert went on to tell me that he can prepare for it by sitting down but I have actually never known him to do this.I don’t know if it’s because his processing of everything is slow or if there just isn’t a lot of time to realize he’s having one and then be able to do something about it.

Q: Based on Robert's having about five over the weekend when you witness the seizures, would you estimate an average of two a day?

Trish:It’s very hard for me to estimate how many seizures Robert has.Many of his seizures only last ten seconds without any grogginess afterwards so these are easily missed.I actually used to think his average was five per week but that estimate has increased since he’s been coming over on the weekends and I’m able to observe him for longer periods of time.I think I’d have to agree that he has at least two per day but suspect the average may be a bit higher.

Q:Can/does Robert have seizures when he sleeps or are they only when he is awake?

Trish:Seizures can definitely happen when a person is asleep.Since Robert’s seizures do not involve a lot of body movement, it would be difficult to tell if he’s having one while sleeping.Robert has had days where he prefers to sleep in and is very tired during the day.I’ve often wondered if his sleep had been interrupted with seizures the night before when this happens.

Q: Are excretory functions automatically triggered during a seizure?

Trish: People can lose control of their bladders or bowel during a seizure but it doesn’t happen with all seizures.Robert used to lose control of his bladder when he had his Tonic Clonic seizures in high school and it was a very difficult time for him.Robert needs to wear a protective brief all the time now and so it’s more difficult for me to tell if he’s had an accident during a seizure or if he’s had an accident because he is not aware of when he has to use the bathroom (or isn’t quick enough to respond).

Q:Does anything particular bring on the seizures or are they completely random?

Robert:“When there’s too much heat, I have a seizure.”

Trish:I’ve tried to track down his seizure triggers but it is very difficult (and each person with epilepsy is different).Sometimes, there is no rhyme or reason to what triggers a seizure. Stress tends to bring on seizures in Robert and, lately, Robert has been having seizures about five seconds after starting to say grace at mealtime.It is uncanny how often this occurs.I find it a particularly cruel bit of irony since he always asks during grace that “God touch Robert so he doesn’t have any more seizures at all.” Not cool, God. Not cool.

Q:Do the seizures cause damage?Do they leave an imprint?

Trish:The doctors think Robert’s decline (memory loss, mobility issues, incontinence) is a combination of the uncontrolled seizures which can cause brain damage along with the surgeries he’s had and all the medications he takes.There is a question about brain lesions and whether or not they cause the seizure or if the seizure has caused the lesion (one study referred to it as the “chicken or egg” argument).I’m going to bring this up at Robert’s next neurology appointment and ask her opinion about this.

Q:What’s the hardest part of his day? And, what’s the easiest?

Robert:I asked Robert what the hardest part of his day was and he thought for a very long time about it before answering, “They’re all about the same.There’s nothing hard about my day.”I then asked him what was the easiest part of his day and he quickly answered, “Watching Jeopardy and Wheel of Fortune and then going to bed at about 9:00.”

There’s nothing wrong with his priorities!

Robert and I will answer more of your questions tomorrow.If you have follow-up questions or other questions, please leave them in the comment section. Thanks so much for asking such great questions!

This was so interesting and useful to read for me - as someone with no experience with epilepsy or seizures, either in myself or others. I so appreciate the willingness of both you and Robert to share your experiences to help educate us all. It is fascinating to share your journey with you. Thank you.

Imogen, I'm so pleased you learned something about epilepsy and seizures. Robert and I really want to share information about both and it's nice to know people are learning! It really was a treat to "interview" Robert. We had such a good time.

Julia, I'm going to talk more with Robert about his seizures and how he says he can fight them off. He's said it before to me but never really explained what he does to stop them. Sometimes he says he fought it off when I know he still had a seizure but it's possible he's stopping it from progressing further. He's a big believer in mind over matter! I'll let you know when I find out more.

Books for the Caregiver

365 Caregiving Tips: Practical Tips From Everyday Caregivers

Forever a Caregiver, by Trish Hughes Kreis

Tell Your Story

Do you want to tell your caregiving or epilepsy story? I would love to talk to you! Email me at robertssister@att.net and I will publish an interview with you. Telling our own story helps others while also helping ourselves. I look forward to hearing from you! Trish

About Me

Trish Hughes Kreis works as a full-time Legal Administrator and is a freelance writer, blogger and videographer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for four years and they do their best to keep him happy, healthy and, well, excellent.

Trish is an advocate for more research on the long-term effects of uncontrolled epilepsy as well as an advocate for expanding the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act.

Trish also does her best to navigate the maze of social services and government programs available to help Robert and keeps him entertained with an endless supply of word search puzzles and game shows.

Trish contributes articles and videos to the Assisted Living Directory and has written for Caring.com, The Intentional Caregiver, Today's Caregiver and the EmblemHealth “What Care Feels Like” microsite. Trish is a co-author and publisher of the "365 Caregiving Tips" book series written with four other experienced caregivers with the hope it helps other caregivers navigate the world of caregiving. Daily tips are posted on the 365CaregivingTips.com website.